Is it normal that my >insert body part here< hurts?

Sharing your symptoms with PatientsLikeMe

Have you ever been sick and googled your symptoms? There’s a good chance the Internet told you you might have something way worse than your doctor told you, or that your little headache means you might have a brain tumor… Or have you ever been sick but experienced there was no one close by to talk to and ask what symptoms are normal or what you could expect?

PatientsLikeMe helps people connect with other patients who know what they’re going through to share experiences and advice. Users can make a free health profile which is made up of quantitative and structured reporting tools, after which they and other members are able to monitor their health status. So instead of only knowing how healthy they are during the doctor or hospital visit, or document the severity of their symptom at those touch points, patients can now identify triggers and note how they’re responding to their treatment just at home.

Now your question is, how do they make money, as users can join the platform for free? PatientsLikeMe actually applies the same business model as Facebook or Intagram in that sense, as they make money by selling customer data (however, advertising is not allowed on the platform). Pharmaceutical companies pay PatientsLikeMe for the medical data collected by the platform.

Figure 2: PatientsLikeMe’s business model (Board of Innovation, 2013)

The first question that crossed my mind when viewing this platform was whether people would actually use it and gain a better experience compared to not having this platform. Yet apparently, 59% of the users found recording their symptoms on the site ‘helpful’ or ‘very helpful’ in managing their condition. In addition, 70% of respondents feels like the site improved their ability to cope with problems in their life, 72% said that the platform made them feel more in control of their condition and 62% claimed that it enhanced their quality of life (Wicks et al., 2010).

What I find interesting about this platform is that it abandons the idea of health having to be a part of public sector institution, and even finds a way to get money out of it. In addition, it treats physical and mental illnesses in an equal manner which I believe is not the current standard in most health institutions. The platform is a great example of customers creating their own value, and the strength of same-side network effects is clearly visible (the value for patients increases when other patients join the platform). In addition, it is therefore also a great example of how to fulfill a certain need (share experiences regarding health) and make money out of it.

Of course patients’ medical data is very sensitive and the reselling of it raises major privacy concerns. However in the ten years that this platform has existed there has been no situation in which information was misused or not protected in a sufficient way. Of course, we should increasingly be more careful with sensitive data on the Internet, but I feel like that is a discussion we could hold on a much wider context and shouldn’t discuss in this blog again.

Another danger of using the Internet that the platform does not completely resolve is that people can make wrong decisions by ‘playing their own doctor’. Especially because this platform is more reliable than random blogs or search terms, people might trust their own opinion more when it is based on PatientsLikeMe. On the other hand, the information is more reliable as symptoms are now more set in a certain health context. So far only 3% of e-patients have reported that they or someone they know that has been harmed by medical information found on the internet (Wicks et al., 2010).

The platform shows that patients who have chosen to explicitly share their health data within the PatientsLikeMe community, experience great benefits and can help them engage in dialogues that could help them self-manage their disease. Especially people who share as much data as necessary and are completely engaged to the platform, which surprisingly are the patients with the most serious illnesses, experience the highest satisfaction (Wicks et al., 2010). On a concluding note, I believe this platform is a great addition to the quality of life for most patients, but should not replace the doctor-patient relationship.